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IACFS/ME Primer - 2014 Edition

The Massachusetts CFIDS/ME & FM Association, a 501(c)3 founded in 1985, exists to meet the needs of patients with CFIDS (Chronic Fatigue and Immune Dysfunction Syndrome, also known as Chronic Fatigue Syndrome), ME (Myalgic Encephalomyelitis) or FM (Fibromyalgia), their families and loved ones. The Massachusetts CFIDS/ME & FM Association works to educate health-care providers and the general public regarding these severely-disabling physical illnesses. We also support patients and their families and advocate for more effective treatment and research.

Scott E. Davis, ESQ. is a Social Security and Long-term Disability Insurance attorney in Scottsdale, Arizona. The majority of his disability practice is devoted to representing individuals with FM and/or ME/CFS. Scott has extensive experience in handling FM/ME/CFS cases and does represent individuals throughout the United States. In most cases he charges a fee only if his client obtains benefits.

The following article focuses on obtaining disability status from Social Security with a diagnosis of fibromyalgia, but the advice (although from 2009) is relevant to those with a diagnosis of ME/CFS.

The American College of Rheumatology (ACR) changed the diagnosis requirements for fibromyalgia in 2010. See Diagnosis of Fibromyalgia for the new requirements. As a result, the Social Security Administration modified its requirements for the documentation of fibromyalgia as a medical impairment in 2012. See [insert link] for an update on the new ruling.

In the article on obtaining disability with Myalgic Encephalomyelitis/Chronic Fatigue Sundrome (ME/CFS), I analogized obtaining Social Security Disability benefits based on any disease or ailment to the epic battle between David and Goliath.

Unfortunately, obtaining disability benefits based on fibromyalgia (FM) and/or ME/CFS sometimes can be similar to David versus Godzilla. Why?. . in part due to a lack of education at the Social Security Administration (SSA) and human bias against claimants who appear to be "healthy" compared to those afflicted with a more understood and obviously disabling diagnosis. Indeed, I must confess that three years ago I had never heard of fibromyalgia.

However, the good news is FM and ME/CFS claimants can and do obtain benefits with proper preparation of their case coupled with an understanding of how the system may view them.

Take a deep breath and relax!!! Before you call SSA to give up, please read on, as this article will give you important (maybe critical) information to use in your pursuit of disability benefits.

As a disability attorney who concentrates on representing those with FM and/or ME/CFS, I find two things interesting about my clients. Most are very educated about their disease(s) while others have never heard of a tender point. Second, almost all have great difficulty explaining to family, friends and other people (that they could care less about!) that even though they appear "healthy," in fact, the diseases have left them debilitated. Many feel as if their disease and the resulting limitations are often not taken seriously. Undoubtedly, every client has experienced the look of disbelief and a raised eyebrow from another person when trying to tell him or her the diseases have literally ruined his/her life.

Thus, similar to the real world, it is not surprising that at the SSA the problems of education and bias can be alive and well. This reality is of paramount importance. Why? Because it should dictate how one proves he/she is disabled. Please understand I am not saying SSA discriminates, intentional or otherwise, against FM and/or ME/CFS claimants; but rather that your claim (especially if you are under 50 years old) may be viewed by SSA or an administrative law judge (ALJ) with a raised eyebrow.

FM and/or ME/CFS are no strangers to SSA and ALJs who decide whether you are disabled; however, that doesn't mean they understand or appreciate the diseases.

In what may be considered the landmark FM disability case, Preston v. Secretary of Health and Human Services, 854 F.2d 815 (6th Cir. 1988), a Federal Court of Appeal unknowingly provided a framework within which SSA and ALJs should evaluate FM (and logically ME/CFS) disability claims.

In May 1997, nine years after working at bureaucratic breakneck speed, a Regional Chief Judge issued a memorandum to other ALJs which provided a framework to follow at a disability hearing before a diagnosis of FM is accepted. Although the following will focus on FM, I believe it can also apply to ME/CFS. Ignoring these factors could be fatal to your claim.

Notice about names

The Massachusetts CFIDS/ME & FM Association would like to clarify the use of the various acronyms for Chronic Fatigue Syndrome (CFS), Chronic Fatigue & Immune Dysfunction Syndrome (CFIDS) and Myalgic Encephalomyelitis (ME) on this site. When we generate our own articles on the illness, we will refer to it as ME/CFS, the term now generally used in the United States. When we are reporting on someone else’s report, we will use the term they use. The National Institutes of Health (NIH) are currently using ME/CFS. The Centers for Disease Control and Prevention (CDC) are calling the illness CFS.

Until there is consensus on a name for the illness, the Massachusetts CFIDS/ME & FM Association name will not change.